A FAMILY PERSPECTIVE
Advocating for Your Cochlear Implant Child: It’s not just about the IEP

When our older son, Thom, was diagnosed with severe hearing loss and on his heels, four months later, his younger brother, Sam, diagnosed with profound hearing loss, many things went through my mind. Questions about "would they be okay," questions about schooling and friends and resources. As hearing parents, I'm sure all of us who have kids with hearing loss can relate. What I didn't realize but learned over time is that I would need to be my children's best advocate in all ways—educationally, socially, and then I learned I would also need to become an expert in All Things Insurance.

Our first insurance challenge came early on, when our sons were still using hearing aids. It's quite a shock to find out your children are deaf, then to find out how expensive hearing aids are and that usually, insurance doesn't cover them at all. We worked with the boys’ pediatrician and their audiologist to petition our health insurance company to create a medical necessity exception and we ultimately prevailed. I learned “always ask” and to keep asking. It’s proved to be successful for our family.

As a young teen, Thom lost more hearing and we made the decision to move to cochlear implants for him. For Thom, the approval process was mostly smooth sailing. Six months later, our younger son, who saw how well his older brother was doing with his new CI, also had surgery after two denials by insurance. The third time was the charm for Sam. The first two reviews that were denied were conducted by a family physician and then an emergency room physician. Finally, our insurance at the time had an ENT review Sam’s records and he was ultimately approved for surgery. Interestingly, the following year when both boys had their second CI surgeries to become bilaterally implanted, insurance approval was quite easy.

I’m writing a separate article for ACI Alliance regarding insurance coverage of processors and parts. That will appear in the future. I discovered this page that’s part of the ACI Alliance website to be incredibly helpful: http://www.acialliance.org/page/Insurance

An interesting thing about advocacy is how it changes as our kids get older. When they are young, as parents it’s our job. But by the time our boys entered middle school, they were attending their own IEP or 504 meetings. I should note that often they were the only students in their school with hearing loss and they were always the only one in their class. We always felt lucky if a teacher who taught Thom then had Sam two years later since it meant they had some experience working with a student with hearing loss.

We built into their educational plans meeting with their teachers as a group just before school started each year and both boys ran their own meetings. They would begin talking a bit about their audiological history—their story is a bit different in that neither was the beneficiary of newborn hearing screening. (It wasn’t available in Louisiana when Thom was born and also wasn’t available in New Hampshire when Sam was born.) Consequently, they were diagnosed and aided relatively late. Thom was 3-1/2 when he received his first set of hearing aids; Sam was 15 months. And then of course the big change from hearing aids to cochlear implants as young teenagers. I’ll never forget when Sam was in 8th grade and conducting his intro meeting with all his teachers. After talking about his hearing history, he transitioned to academics with the statement “And now I’m going to tell you what you need to do for me so I can be successful in your class.” His English teacher that year was also the coach of the high school football team. I’ll never forget the look on his face when Sam said that—it was a true “wow” moment. The meeting was so helpful in opening up an easy dialogue between our sons and their teachers. Sam’s social studies teacher told Sam after the meeting “You know I want to do the right thing but may make mistakes so please let me know if I do”.

The other thing that was interesting in hindsight is how my role as advocate was first appreciated and admired “you are such a great advocate for your sons” but by the time they entered high school and beyond, the expectation was very clear that my sons would advocate for themselves. It was at first hard for me knowing when to stay back and when to step in. Self-advocacy is a skill that has served them well into college and beyond. I appreciated their school’s emphasis on advocacy—it was something that was expected of all students at the school.

Parents today are lucky in many ways that information is readily available via many formats. On the other hand, sometimes there’s almost too much information with the very real need to sift through what’s important and what’s accurate. I only wish the ACI Alliance was available when our boys were young. There’s so much valuable and valid information and assistance. The wonderful thing too is there’s something for everyone. There’s so much information for parents who are new to this journey including information on education and insurance. My young adult sons benefit from the ACI Alliance as well. When you seek information from the ACI Alliance, you know it’s fact-based and accurate. When our sons were young, we started a parent support group at our local hospital. It was sponsored by Clarke School for the Deaf in Northampton MA and Dartmouth-Hitchcock Medical Center Audiology. We’re in a fairly rural area in west-central New Hampshire (on the border of Vermont) so most parents and kids in the group were often the only kids in their town with hearing loss. With some online friends (who I’ve yet to meet in real life!), we started the Listen-up listserv which brought parents of kids with hearing loss together.

Our sons are doing well thanks to the village of amazing professionals and parents who’ve been there, done that. I love the words of Mr. Rogers “look for the helpers”.

Left to right: Thom, Sam, Hugh and Barbara Mellert atop the Empire State building, NY